LLS Light The Night Walks An Ongoing Mission For Local Woman

By Nancy Crevier

Tuesday, September 10, 2013

Photo: Nancy Crevier

Ginny Chion is happy to set up collection boxes around town for donations large and small to benefit the Leukemia & Lymphoma Society, as well as to write letters and speak, soliciting donations for the Newtown Light The Night Walk. Ms Chion is an 11-year volunteer with Light The Night, and is a founder of the Newtown Light The Night Walk event. This year’s event takes place Saturday, September 28.

Newtown will host its 2013 LLS Light The Night Walk on Saturday, September 28. Fundraising has already started by teams across the region, but others are welcome to join the effort.

The first Light The Night for the Leukemia & Lymphoma Society (LLS) in Newtown took place at Newtown High School in the fall of 2009, organized by Sandy Hook Resident Ginny Chion with the help of Newtown High School Athletic Director Gregg Simon. While it was the first appearance in her hometown of the annual findraiser for LLS, 2009 marked the seventh year Ms Chion had been involved in organizing teams to walk to support the mission of LLS, to cure leukemia, lymphoma, Hodgkin’s disease, and myeloma and improve the quality of life for patients and their families.

Four years later, Ms Chion continues working to bring awareness about blood cancers through Newtown Light The Night efforts.

“We lost our son, Greg, to acute myeloid leukemia (AML), in 2000,” said Ms Chion. At a doctor’s visit, expecting to hear a diagnosis of Lyme disease that year, Greg instead was diagnosed with AML, requiring a white stem cell transplant.

His sister turned out to be a perfect match, and despite a more than three-month recovery in near isolation, the family was hopeful that their active and accomplished 17-year-old would recover fully.

“Greg was a member of the National Honor Society, the Spanish Honor Society, co-captain of the NHS boys’ swim team, and a drum major in the marching band. He marched in the 2000 Labor Day Parade, even though that was still a stretch for him. That really wasn’t a great idea,” recalled his mother.

Greg returned to school part-time that fall, but in early October, he began to not feel well.

“He died October 26, 2000. He was exactly 17 years and 3 months old,” said Ms Chion. “We had expected Greg to live, because the transplant was a perfect match, which really increases the chances,” she said. Instead, he died from the complications of a fungal infection of the lungs.

It was not until 2002 that Ms Chion, along with Beth Montoya, organized “Greg’s Group” for the Light the Night walk at Fairfield Beach. LLS had assisted the Chion family emotionally and financially during Greg’s illness, and she wanted to give back.

“This was an organization that really helped. It was not just about raising money,” she said.

After that first walk, she was so inspired that she urged the organizers in Fairfield to bring the walk to Danbury or Newtown.

“But no one knew where we even were, then,” she said. So Greg’s Group continued to support LLS at area Light The Night events in Fairfield, Trumbull, and finally Danbury, with her team raising up to $20,000 a year.

In 2009, she was able to convince organizers to walk in Newtown.

“It was supposed to be held on the high school football field, but hurricanelike winds and rain moved the event indoors,” Ms Chion said. Exactly 300 people participated in that first Newtown Mini Light The Night Walk, raising $30,000 for LLS. “Then,” said Ms Chion, “everyone knew where Newtown was.”

The Newtown Light the Night Walk moved to the grounds of Newtown Youth Academy at Fairfield Hills the following year, when construction to the school began, drawing still more participants. That first full Light The Night event in Newtown included live music, refreshments, information on cancers, and a two-lap walk “with participants carrying balloons to identify themselves as cancer survivors,” according to information in The Bee that year. It has been held there consecutively since, attracting an increasing number of participants each year.

Ms Chion is humble about her longtime involvement with the Newtown Light The Night Walk.

“I just put people together; I didn’t really ‘found’ it,” she said. “I just want people to be aware that so many young people — and older people — are diagnosed every year [with leukemia or lymphoma]. I didn’t know anything about AML until Greg was diagnosed. There were 550 people in Connecticut alone last year, diagnosed,” she said.

A former Middle Gate Elementary teacher, she is comfortable speaking to people, so fundraising using her speaking and writing skills comes easily to Ms Chion.

“I write letters to many organizations in town, asking for the $250 donation that will give them a signature mile marker on the Walk, and sometimes I speak to groups,” she said. “We get a huge amount of support locally, from clubs, businesses, restaurants, banks, and nonprofits. I’m thankful for the continued support of the community, in light of the impact 12/14 has had on our town,” Ms Chion said.

Twelve years after the death of her son, Ms Chion continues to find the Light The Night Walk both comforting and difficult. It is a cause in which she has much belief, though. “I think eventually, they’ll find a cure for leukemia,” she said, and when they do, she is hopeful it will affect finding cures for other types of cancer.

“Last year, LLS was supporting research right here at Norwalk Hospital,” Ms Chion said, “and I hope that they are making progress toward a cure.”

Her mission is to raise awareness.

“I don’t give up,” said Ms Chion. “It could be anybody tomorrow.”

The 2013 Newtown Light The Night Walk “Let’s Walk To The End Of Cancer” to support LLS will take place on Saturday, September 28, at Newtown Youth Academy, 4 Primrose Street within the Fairfield Hills Campus. Registration opens at 5 pm, and the walk begins at 7 pm, when walkers carrying illuminated balloons of red, white, and gold will light the night. For more information or to register, visit www.lightthenight.org/ct.

Light The Night is an opportunity to remember those who have lost the fight with blood cancers, and to honor those who continue to or have won the battle against the various forms of leukemia, lymphoma, Hodgkin’s disease, and myeloma.

Every four minutes, in the United States, someone is diagnosed with a blood cancer, according to information provided by LLS, and every ten minutes, someone dies. Leukemia is the leading cause of cancer death for those under the age of 20. LLS supports research in the United States, Canada, and seven other countries, with research commitment of $1,257,100 in place in Connecticut.